Several tests I did years back showed that I was of the AS genotype, until a few months after I had my older twins and we went to the hospital for treatment as they were ill. It was a Catholic hospital and for a first time patient, they always do all the basic tests including HIV and genotype.
They tested my children and the boy’s genotype came out as AC, that was the first time I was hearing about that and after asking some questions, I decided to get tested myself, as I knew my husband was of the AA genotype. Test came out and I was told I was AC after all…the mystery of how my son was AC was solved.
When I was told initially I was AS, I had no reason not to believe the lab or the doctor who read out the tests for me, both in my University Medical Centre, during admission process, and the doctors before that time or the ones afterwards. I had been through many doctors, done this genotype test many times, and gotten AS…yet, I wasn’t.
I have found that, for most people, the verdict of their medical doctor or anyone in the medical field is like the final say. I know I was like that too, until I got on this community and started to question so many things. And it was asking questions and not relenting, even when the doctor says otherwise, that has saved the lives of some women.
At least, my own misdiagnosis was a somewhat simple case of genotype, there are women in pain daily, yet have no relief, because their doctor failed to diagnosis their condition. These women have endometriosis, but they were being treated for something else entirely. They shared their story, so it could help someone out there.
From the moment, she started her period at the age of 13, she was always experiencing pain. In fact, her first period lasted for three weeks and it was mostly heavy flow on all of those days. That was when her visits to the doctors started.
Her 13 year old self was in pain, she was bleeding like crazy and at the end of the whole testing, she was told the period was being extra-long because it was her first time and that the pain would ease as she went along. She and her mom were told what to do to relieve the pain in the meantime; hot water bottle, massages and plenty of rest in addition to the pain medications she got.
It worked only for a few months, her body got resistant to the drugs and before she knew it, she was a regular face at her doctor’s office and she wasn’t even 18 years old. If there was one constant thing in her life, it was the pain. Whether she was on her period or not, she was in pain. She bent over, she was in pain; she walked, she was in pain. It affected every part of her life and yet the root cause wasn’t diagnosed until she was about 22 years old and had a crisis while in school. They took her to the hospital and for the first time, she actually spoke to a Gynaecologist, who asked plenty of questions about her life, her menstrual cycle and such. She suspected endo but sent her for tests to confirm that was what it was. She was right.
Pamela had been suffering from endometriosis all her life and not one of the doctors; she had seen had picked up on it. She was just told she had a case of bad menstrual cycle and that it would get better with years. Unfortunately, it didn’t. Pamela still suffers pain, as she waits to undergo surgery to know the full extent of her endometriosis.
Fisayo had an even rougher deal, as she was actually using medications for another condition, totally unrelated to what she was suffering. She was seeing a different specialist to the one she needed to see.
Her almost constant pain meant she was nervous about practically everything. Because of this pain, she had next to no social lifestyle. She once saw a doctor who decided that her pain was psychological, hence she was sent to be evaluated by a specialist and then placed on anti-depressant medications. But it barely helped.
She was still nervous, she was in pain and the drugs did nothing for her. Until she met a nurse, who told her her pain wasn’t normal and that was when everything changed. She was referred to a Gynaecologist, who knew a lot about endometriosis.
Fisayo has undergone surgeries to treat her condition, even though the pain is way reduced than it was before, it is still present, but there is hope for her, that if she does more surgeries, then she would be able to live a decent life, free of constant pain.
For Nkechi, the pain had started all of a sudden in the middle of the day as she sat down to eat her lunch. It was as though everything inside her was being twisted together. She wasn’t able to eat the food in front of her. She had tried to manage the pain, after all, she was in the office, but as she got up to take her food back into its pack, she doubled over in pain and if not for the fast reflex of her colleague, she would have hurt herself as she fell down.
That moment she fell, she blanked out and woke up later to see people hovering over her and calling her name. And with a vengeance, the stabbing pain in her middle returned. She managed to tell them to please take her to the hospital. They did and there, she was treated for her pain.
Thinking it was going to go just as it came, Nkechi was in for a shock as the pain continued the day after and the one after that one. Soon Nkechi was going about with pills and popping them as soon as the pain would start, which had now become a regular part of her life.
Eventually, Nkechi got tired of the pills and went to see a new Gynaecologist, who had been mentioned to her in glowing terms. She went to him and for the first time, someone was asking questions, no one else had asked; “Are your periods irregular? Is your pain worse then?” She hadn’t mentioned these symptoms to the other doctors she had seen, because she thought her pain was as a result of her reactions to her diet.
Her first laparoscopy found that her endometriosis was all over her bowel, ovaries, bladder, everywhere…no wonder the pain. Nkechi has undergone, and will undergo, surgery to remove as much of the endometriosis from her internal organs. She isn’t perfect yet but she is definitely getting there.
The stories of these women make one wonder, why it is so hard to diagnosis endometriosis. This is a condition that affects one in 10 women/girls according to the Endometriosis Foundation of America.
With cases like this, it becomes even more important that you are your own health advocate and that can only be done if you acquire knowledge about the condition and go with your gut instincts. If your doctor isn’t listening, perhaps, you need to find another one.
Knowledge, as they say is power.
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